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‘Strong and Loving, Relentless and Fierce’: NY Home Care Workers Win Big

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A dense row of people in wheelchairs, with other people standing behind them, and a big “NY” sculpture behind them. Crowd is diverse, with colorful clothes and red signs reading “Fair Pay.”

Years of organizing led by home care workers, older adults, disabled people and family caregivers put home care on the map—and won much-needed raises for workers.

New York Caring Majority won the largest investment in home care in the state’s history with their Fair Pay for Home Care campaign: nearly $8 billion over four years to raise wages for home care workers, according to Senator Rachel May. The April 2022 win was historic but not what the campaign demanded.

Stephanie Luce interviewed Ilana Berger, of New York Hand in Hand: The Domestic Employers Network, and co-director of New York Caring Majority, about the campaign.

Stephanie Luce: How did the campaign to raise wages for home care workers in New York State start?

Ilana Berger: The campaign came out of many years of organizing, initially convened by Hand in Hand and Jews for Racial and Economic Justice (JFREJ) as anchors for Caring Across Generations, a national campaign launched in 2011.

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JFREJ, the National Domestic Workers Alliance and their New York City affiliates led a series of care sector neighborhood assemblies from 2011–2014 and in 2015 JFREJ and Hand in Hand convened organizations across the state representing the core constituencies in the long-term care system and launched the New York Caring Majority (NYCM).

New York, like the rest of the country, is aging rapidly and people are living longer. Pretty much everyone wants to live and age in our own homes and communities. COVID made this more clear—at least 20,000 people died tragically and unnecessarily in nursing homes in those first few months of the pandemic. Many people will need home care to remain in their homes.

But home care is unaffordable for most, unless you impoverish yourself to qualify for Medicaid.

The other challenge for New Yorkers in finding home care is that New York is facing the worst home care worker shortage in the country because the pay is so low.

These were the issues NYCM has tackled since the beginning – making home and community-based services including home care accessible and affordable, and ensuring home care jobs are living wage jobs. This is a fight to invest billions of dollars into a workforce that is largely women of color and immigrants, that supports older and disabled people – all populations that have long been marginalized and disinvested in. We knew that to win, we needed ALL of our core constituencies to be aligned around a common vision and strategy.

We spent the bulk of 2016–17 building the trust and relationships needed for a solid coalition. In 2019 we won the inclusion of long-term care in the NY Health Act and worked with allies for its passage (this work is ongoing.) We also launched a campaign to win a Home Care Jobs Innovation Fund. We knew the Innovation Fund was not a full solution to the homecare shortage but it was what we felt was possible at the time, and it would help build our power to allow us to fight for bigger wins. 

SL: So what happened when COVID hit?

IB: If you ask people in a room of 100, “Who here has been a caregiver, needed care, or have close connections to someone in either camp?” 99 people will raise their hands. They understand inherently that investing in care is essential. But before the pandemic, care wasn’t “newsy”—it wasn’t even considered a public problem. Rather, it was seen as an individual issue, something people grappled with in our own homes. Our goal was to get everyone thinking and talking about home care.

COVID changed that, and care work became part of the public dialogue. The magnitude of the crisis pushed us to make a bold demand to fix the worker shortage, not something tiny and incremental. We created the Fair Pay for Home Care Act, calling for home care wages to be tied to 150% of the highest minimum wage rate in the state.  We weren’t sure how far it could get, given how ambitious and expensive it was.

But it kept moving forward. We got Dick Gottfried, Chair of the Health Committee in the Assembly, and Senator Rachel May, as our co-sponsors. In just two months in 2021, we secured nearly 60 sponsors in the legislature—with strong bi-partisan support. We made it into the final budget negotiations, but in the end, we didn’t win: Governor Cuomo didn’t include it in the final budget.

It was a good learning experience and it built our coalition. Our organizers built powerful grassroots groups all over the state and we were ready to keep fighting.

So, coming into the 2022 budget, we had tremendous momentum. Throughout the summer and fall of 2021, we provided resources and support for our members around the state to organize in their communities, meet with their legislators, get sign-ons, do media work and host public rallies and press conferences. We would refresh the Assembly and Senate page every day and see new legislators signed on to Fair Pay and had to figure out which members had made it happen. Monthly member calls were so energizing and empowering because people were doing so much work on their own (with the support of our amazing organizing team).

In July 2021, Senator May held a hearing in Albany on the long-term care workforce, where Fair Pay for Home Care dominated the conversation, and SEIU 1199 announced their support publicly for the first time. Then the AARP-NYS and NAACP signed on. We had support from all over the state, including a super-majority of Democrats in the Senate and the Assembly. We hosted press events with the State Legislative Black, Puerto Rican Latino and Asian Caucus and Women’s Legislative Caucus. Gubernatorial candidates Letitia James and Jumaane Williams joined our NYC campaign launch. And we had a lot of Republicans in both chambers signing on too! Forty-seven directors of County Offices on Aging signed a letter calling on the Governor to include Fair Pay in the budget.

Kathy Hochul became Governor in August 2021, replacing Andrew Cuomo. We were cautiously optimistic—she couldn’t be worse than Cuomo. We had a WhatsApp group of members around the state tracking her events, and one of our members showed up to an event of hers and talked to her, securing us a meeting. In the end, she turned out to be more of a Cuomo 2.0, but before the budget, many of us hoped that she would be different.

So, we had this coalition of Democrats, Republicans, urban, rural, suburban, home care workers, unions, disabled people, older adults, the big advocacy groups for all those constituencies, big home care agencies and a home care association, civil rights groups, faith groups. We organized over 25 events between January and March. The full language of Fair Pay for Home Care made it into both the Senate and Assembly budgets.

In the final weeks of budget negotiations, we upped the pressure, with daily presence in the Capitol. About 150 coalition members came to Albany, with about 40 staying overnight at least part of the time. We were joined by hundreds of SEIU 1199 workers, AARP members and staff from County Offices on Aging. Each day we led compelling, arts-filled actions, including creating a 100-foot scroll—“Governor Hochul’s Home Care Wait List”—that made it into countless media stories. Throughout March and April, people called, texted and emailed to have their names added – it was one of many ways we had to include people who couldn’t join us. We also had virtual story-telling sessions as we occupied a room outside Governor Hochul’s offices in the Capitol.

Over 50 people got arrested—many for the first time, mostly older people, disabled folks and home care workers. We had a member who came all the way from Buffalo who said, “I’m not leaving until I get Fair Pay for Home Care.” She hadn’t been able to find home care at all. She was sleeping in her wheelchair and often skipped meals because she had no home care.

We had legislators giving us office space, helping sneak food into the Capitol for us, and providing us with all kinds of support in addition to championing Fair Pay in their respective chambers.

SL: How did it end up?

IB: On one hand, we didn’t win our demand: wages at 150% of minimum wage. On the other hand, we won the biggest investment in home care in decades. The final budget represented a significant improvement over the governor’s initial Budget, which only included minimal bonuses for workers. Home care workers’ wages will go up by $3 an hour over 18 months, and the raise is indexed to the minimum wage.

But we put home care on the map. We did it through very dogged, incessant grassroots organizing. Through smart insider connections and policy work. We had an amazing communications consultant and grassroots leaders sharing their stories across the state, which led to an incredible amount of media coverage. We had a compelling research report to make the economic case, showing that investing in home care would be a $2 for $1 return on investment. By the end, the media was using our talking points as news, citing an analysis showing that New York State has the worst homecare worker shortage in the country. Our organizing, led by older adults, disabled people, family caregivers and home care workers across the state put the home care crisis in the spotlight.

SL: Can you say more about the organizing work and how you got people involved?

IB: We built deep roots, even during COVID. In the summer of 2020, during lock-down, we started “Organizing and Mutual Aid” zoom calls. Over 100 people would join to talk about our organizing plans and support each other. The calls were emotional and uplifting – people came for community; we’d play music and dance at the end.

Our infrastructure was very lean. We had no dedicated coalition staff; instead people from multiple organizations put time into the campaign. But without strong grassroots leadership, there is NO WAY we could have achieved the depth or scale we did. People across the state were organizing their own people, their own events and actions, pitching their own stories to the press and meeting with their legislators.

We had talented organizers doing one-on-ones with people, going through their networks and bringing in more people. We partnered with many Independent Living Centers and organizations in the aging services network. We tapped people who were involved in some advocacy to get more involved and become leaders, and made high-bar asks of them. We had structure, training, and support to help them.

We also gave a lot of entry points for people to participate, so everyone could find a place. Some were members of the partner groups and some just considered themselves members of our coalition, the NYCM.

This was all during COVID, with a lot of immuno-compromised people, so we had to be careful and have safe ways to participate. For example, we had a Letter to the Editor Toolkit, and we had a member who worked with anyone around the state who wanted to write one.

On the Friday when we realized the budget was going to be late, we had to completely regroup and mobilize a week of actions without any plan. That next Monday we managed to pull together a huge press conference with people from around the state.

We knew that if you want to have a real grassroots base, you have to tend your garden because you cannot just pull the flowers at the end if you haven’t been tending the garden. But we had so many beautiful flowers because we’d been really tending that garden.

SL: In addition to what you’ve named, are there other factors that explain your success?

IB: We invested in making it accessible to everyone. It takes a lot of money and coordination but when you do it, it’s so powerful.

We intentionally built support across geographic regions and political sides. We were not sectarian because we know that care impacts everyone. We created a narrative that ensured this wouldn’t be pigeon-holed as a labor issue, or a disability issue, but a universal human issue that affected the vast majority of New Yorkers.

Our story-telling also helped lift this issue up and move decision-makers. We supported the leadership of people with disabilities and older adults across the state to share their stories, educate decision makers and engage with the media to build the case for real investment in our care infrastructure.

SL: How did you make big strategic decisions?

IB: The Fair Pay campaign team intentionally included a broad cross section of organizations. These organizations and individuals brought hugely different skill sets. We let each group do its thing. We trusted each other. We communicated well, so we were able to have many things happening, but in alignment.

NYCM has a steering committee. But the Fair Pay campaign team was much broader, and we had weekly campaign calls that were open to all organizations. We also did monthly grassroots leader calls. It was not a textbook coalition in terms of written up structure and process. Two of us have acted as co-directors of NYCM but not in an official, paid way.

Our strength was that we were not bogged down. There can be a tyranny of process in the nonprofit world that creates more process and structure to create more process and structure. Our campaign was very oriented towards winning and getting the work done – that was ONLY possible because of relationships and trust, and slow ego in service of getting the work done.

Some of the most powerful decision making happened in Albany in the last few weeks – because everything changes constantly during the budget negotiations, most of our plans were made up by our members on the fly, and because of our incredible organizers, they happened with democratic process. 

SL: Can you share one of your favorite moments of the campaign?

IB: Part of what I loved was that we were embodying care in this movement in a way that was very moving to people. We had a strong loving culture AND were relentless and fierce. You can do both!

We had people coming from all over the state who needed care to be living with us at the hotel. Even just to be in the Capitol they needed help to use the bathroom and to eat.

We had home care aides with us the whole time that we paid $22.50 an hour. They were amazing and many of them also got arrested. But we had several members say to us, “This is the first time in 16 months that I’ve gotten three meals a day, that I’ve been able to take a shower when I needed to in the morning, that I’ve been able to sleep in a bed.” So, we literally were modeling the world we were trying to win by giving care. By showing that people how well people could thrive if they actually had the care they need.

Featured image: When they learned the state budget would be late, New York Caring Majority pulled together a press conference with people from across the state—on three days’ notice. Photo courtesy of NY Caring Majority.

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